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Thoreau

I went to the woods becauseI wished to live deliberately,to front only the essentialfacts of life, and see ifI could not learn whatit had to teach, and not,when I came to die,discover that I had not lived.I did not wish to livewhat was not life,living is so dear;nor did I wishto practise resignation,unless it was quite necessary.I wanted to live deepand suck out all the marrow of life,to live so sturdily and Spartan- likeas to put to rout all that was not life,to cut a broad swath and shave close,to drive life into a corner,and reduce it to its lowest terms,and, if it proved to be mean,why then to get the whole andgenuine meanness of it,and publish its meannessto the world;or if it were sublime,to know it by experience,and be able to givea true account of itin my next excursion.

27 December, 2007

We stopped at home long enough to repack our bags, make a mess and pick up the dogs. We arrived in Tahoe at 10:30 this morning. Descartes got to work in the car on his new cell phone the Samsung SCH-i760 yeah I got one too... so so sosososososoooooooooooooo cool!

My other parents are here Walter and Momster. The house is crowded but it is beautiful and cozy at my sister's house. It keeps snowing on and off. Everything is set up so Jake and Lucy are comfortable, my dad will keep us all well-fed, and having a mom around to help is always a relief.

I play Santa and hand out all of the silly little things I have found for Demanda, Jaster and the boys. The Backyardigans guitar is a hit. (Descartes and I get it right most of the time... we sent his sister's girls a karaoke machine with High School Musical tracks... oh yeah!)

Lucy loves playing with her cousins and Jake is being very careful not to step on any babies.Once again.. I am the luckiest person in the whole world.

25 December, 2007

What a beautiful morning. The sun is shining the palm trees are actually swaying in front of my hotel room balcony. We are the luckiest people in the entire world.

My daughter likes to eat jelly straight out of the jar...and run around nekkid.

My son could live all day in the shower here. It is 5 feet by 7 feet with a soft-toned but well placed light imbuing the entire shower enclosure in a warm, cozy hue.

************************************There is nothing open on Christmas day. Not in Newport Beach. We know this. We knew this, and yet somehow we still decided to "go grab lunch" instead of ordering room service again. I'm not sure why I was so price-resistant. I couldn't bear to spend 60 more dollars.. which is kind of silly because a) my parents are treating us and b) that's just about what lunch for four costs no matter where you go around here.

We found a Chinese restaurant open on Balboa Island RiceLand. Lucy slept while Jake and Descartes and I ate Chinese food in the car. The we drove to the park near my mom's house to let Jake run around before he would be required not to.

When we got to the park, Lucy was still sleeping so Descartes slept in the car too while Jake and I went over to the play area and scared all of the other parents there. I swear they were afraid their kids would "catch" whatever Jake had. I don't think we get as many stares in Deadwood City. Maybe I am used to my neighbors, or more confident, or Jake is more comfortable in his own zone so he looks more "normal", but these people were a little afraid I think of the gigantic 7 year old who was on the kiddie play structure in a little ball with his head twisted upside down (so he could look 'directly' at everything) making crazy cookoo noises. Don't forget that every once in a while he would hop up, make a big noise and run, hands at half staff flapping just a bit, and the sand from the top of his head flying everywhere. Got to overhear a great conversation about how none of them could live without their nannies and television to occupy their children. I am so looking forward to finding new help for Jake in the new year.

***************************My mom and dad's house looked beautiful, as it always does. It would be a beautiful house without anything in it, but they have exquisite taste and they both love Christmas so there are little Christmasy things everywhere and a gorgeous tree and bless them, a tent outside where the china and glassware gets set up and the door closed so the kids can still play in the family room.Descartes and I had already discussed asking my parents if Jake could open his presents before everyone else got there, and they were happy to accommodate. It was great. Lovely new flannel sheets, and a million other things, and the best present... from my step sister Sarsaparilla and James... three wind-up tops that you place on the ground, smack with your hand then they spin and light up with great colors. We all thought they were cool, and of course Jake loved them. She is always so thoughtful. You can tell she really searched for something age appropriate that he would enjoy. It is such a great feeling when people embrace your kids.

Dinner was fantastic, Gerard made smoked tri-tip, we had a ham and scalloped potatoes and and sundry yums, and, of course, my favorite beverage--champagne. Jake went to sleep in the back bedroom, Lucy was precious and did NOT have the first melt-down of the evening... an all-around success for our little family.

**************************Late tonight I got to thinking about Bubsy putting out carrots for reindeer and milk and cookies for Santa last night. It was so precious and so painful to watch. Of course we have never had a kid who asked to do those things, and we never offered... we never offered. Wow. That alone was enough to bring me to tears tonight, but let's add the fact that we have never spent a Christmas in our own house. Every Christmas of Jake's life we have been in Southern California. I am a firm believer that it should never matter where you are, but who you are with on any given day. My home is where Descartes and my kids are...but we never had a kid say "How will Santa find me?" or "Can't we sleep at our house for Christmas?"I think we may be at our own home next year. We can go to SoCal the weekend before Christmas and have that time with my family... or who knows, by this time next year I will have forgotten my tears on the balcony and just have memories of this beautiful view.

Descartes and I are sad because Jake can't handle any more social time, but he is also not really asleep. So basically it feels like we have locked him in a room.

Lucy and Bubsy open their Christmas presents while wearing Disney Princess costumes. Bubsy is Sleeping Beauty, Lucy is Tinkerbell. At some point they convince an adult to open a box of 12 different princess shoes. Girls go clacking through the hallways on the Terrazzo floors.

My brother Gerard spends most of the evening in the garage working on a car.. a Barbie Pink Esclade for Bubsy.. one of those electric things.

23 December, 2007

seriously we are staying at the Balboa Bay Club...there is a party in the suite above ours right now...and can I just say... I am pretty sure they think it is 1990 and they are partying "like it's 1999." They are spitting chew tobacco over the rail where it lands on the deck which extends beyond my rail...and I just heard conversation between two guys about who could swim across the channel faster...and could they make it into the swimming pool if they jumped...I hope they don't try 'cause they SO won't make it...

The Happiest Place on Earth? I'm not so sure about that, but I do know that Jake and Lucy smiled and loved just about every moment from 8am to 3pm. Seven hours of eating and waiting and walking and the Nemo Ride, Jungle Cruise, Pirates of the Caribbean, a roller coaster for Jake and some It's a Bugs Life worm thing. So the price per hour or per ride is really very high (like fifty to seventy bucks), my kids really had a good time. Lucy and Bubsy are a riot together, copying each other, sharing. Gerard and Pinky are raising a very sweet girl. It's such an odd thing to watch my brother be a parent. Especially to watch how similar our tolerances are, and where we each respond. Apparently neither of us have any patience for whining.We tried to go to dinner at Sabatino's with the whole family. Ha! We just did too much today and we were all too hungry to have it be successful. Uhm. yeah we arrived first, wheeled Jake in and he promptly pulled the tablecloth half way off of the table, bringing four place settings crashing to the ground and the lovely candle hurtling, flame burning brightly towards his lap. I saved candle, and none of the plates broke so just cleared our half of the table, folded the tablecloth in half and reset the table keeping everything out of Jake's gargantua-reach. Gerard and Pinky were so helpful that nearly had it together before my parents arrived.Have to go watch Elmo's Christmas Countdown with my family...all snuggled into one big 700+ threadcount bed.

22 December, 2007

We're here. nine hours, or nearly nine hours after we departed we were parked in the parking lot of the Balboa Bay Club. Now we are settled into a glorius sweet...I mean suite courtesy of my parents. Our children were amazing on the trip down.They watched Muppets Take Manhattan, Alladin, and, the clear winner...Charlotte's Web. I sort of thought Lucy would enjoy a talking pig who is friends with a spider.Tomorrow is Disneyland. We're going with my brother and his daughter Bubsy. It will be exhausting, but it is one of those places where Jake is still kooky but he goes unnoticed, and more importantly-he is so happy. By the way my happy boy is currently running around the hotel room NOT sleeping .Lucy is talking with a dolly,trying to make the doll go "night night". Let's hope they go to sleep soon because mommy and daddy are all done.oh hey...I'm using my new cell phone to make this entry. My Christmas present from Descartes...I think I am sooooo cool now.

20 December, 2007

On Tuesday at school, Janet, Jake's teacher decided that instead of Pierre waiting for all of the other children to get settled in on the bus, he, for once, would be able to get on first.

Pierre is in a wheelchair. Wheelchairs always go last. Pierre always waits, patiently and with a smile, but Janet decided that maybe the other kids could wait just a couple of times a week so Pierre could be first to load on to the bus.

You cannot load walking kids at the same time the wheelchair bay is open.. it is a four foot drop if someone makes a break for that back door, and besides, the wheelchair responsibilities occupy all of the bus driver's attention for those few moments.

After explaining to the class that Pierre was going to go first and that they would all wait for their friend, Anna tried to get a head start and put Jake on the bus anyway while Pierre was getting loaded on. She was going to just buckle him in to save some time I suppose.

Anna walked Jake to the door of the bus. He took a step forward, then turned around,

19 December, 2007

Jake's MRI went well today. He is such a good boy. We had a very very hard time waking him up... I think he was finally relaxed and just wanted to sleep.

I figure we won't get any news for a bit.. unless the problem, as Descartes suspects, is a squirrel infestation. In that case I am quite certain we will get a call tomorrow.

Jake is still dragging his foot. He is still crying every day after school. He is still randomly waking up at 3:30 in the morning and only rarely going back to sleep.

We are exhausted. Descartes is sound asleep on the couch..has been for a few hours. I folded laundry for 45 minutes just now, trying to get everything washed an packed by tomorrow night, since we are gong to a holiday party on Friday evening, then leaving early on Saturday for SoCal.

Things I did this week because I am so worried about Jake:

be in serious denial

ate candy

poured myself a cup of Southern Comfort and Amaretto (don't knock it till you try it) last night at 11:30pm

highlighted my hair, at home, after a cup of SoCo and Amaretto, when it didn't really need to be highlighted, since my hair is fairly blonde naturally.

neglected every single task for Can I Sit With You? Please go visit the site..please submit your own stories. We are fast approaching a commitment to do a second book. If you submit your story it could be in there!

18 December, 2007

in denial...haven't been posting because I would need to say something about it.. Jake has had at least four MRIs but this time I am worried, so it s different..before I was just working as the Lead Investigator on Jake's case. I was a researcher...detached. I also thought we would find something that would tell us that he would be "okay"

this time I am worried we will find something that will tell us he's not

Jake may have had a seizure..probably it was weird yawn (since he has been awake since 3 am), but they called and told me that he arched his back and his eyes rolled a little bit, so having not seen it myself.. the Doc will get a call.

in other news from school:

Each morning kids in Jake's class have circle time. They walk to the board, select their name from the field of names and hand it to the teacher. Everyone cheers and says "Yay! You are at school!" or something like that. Jake does it too, and apparently chooses the correct name many times and is generally compliant and follows along and does it independently (his aide, Anna, stays in her seat).

This morning:"Okay it's Jake's turn"Jake gets up, walks halfway to the board (maybe a foot and a half). He stops and turns back around to his aide and SAYS"Gubba,waging pho ewe ANNA!".

the 'Anna' was VERY, very clear.

So they talked a bit about how Jake needs to be independent, and while Anna is his 1:1 aide she cannot do everything for him etc.

Jake walks to the board, picks out his name, hands it to teacher Janice.

The class cheered for him.

He turns, walks back to his chair but does not sit down. Instead he stands in front of Anna and says:

"Iba goma AGHHY art Nog Mutton" (no one could decipher this one) in an angry tone, stomped his foot, threw his arms up and down a few times then

this was a post from the other day.. I am a bit in denial right now about Jake.. I am so worried that I am afraid to write anything because I will need to think about it.

******************************************************December 4, 2007So we are going to get an MRI. He probably does not have a brain tumor. Most people don't. But I realized yesterday that just because Jake has global issues, seemingly impacting every aspect of his physical being.. even though he is all that and a bag of chips... this does not preclude Jake from afflictions which hit other "typical" kids...like cancer, and tumors and broken arms and acne. It is possible that something else could happen to him.

great.

I have decided not to worry until there is something to worry about. I have told everyone what to look for in terms of seizures, and double checked his room to make sure there is nothing sharp he could land on should he fall. He went to the neurologist. School is aware. There is nothing else we can do except wait for the MRI or wait for the symptoms to go away

went to school today and had no apparent problems. His foot is still dragging, but no apparent seizures.

03 December, 2007

I am so glad we already had that neurology appointment set up for today.

Jake fell asleep at school. at the lunch table. during lunch.

He has not taken a nap that was not induced by anesthesia for nearly three years..maybe longer. Not only did he fall asleep, but Anna, his aide, was able to carry him all the way back to the classroom (wow! she's strong!) without him waking up.

There is a possibility that Jake had a seizure. Great! We've never had those before. I am so, so exhausted.

02 December, 2007

with Lucy at a birthday party, a woman actually said to me "I want a daughter just like yours." I'm not sure there is a compliment that could be better than that..

Then this afternoon we, as a family, went to dinner, and Jake was such a good kid, and ate everything I gave him...then was the most precious child at Home Depot, where we decided to get our Christmas Tree.

He was SUPER spaz, but there was a chainsaw sound and three hundred people vying for the perfect tree.

We had so much fun, Lucy in Descartes' arms, Jake and I running into the near empty corrals meant for smaller-sized Noble firs.

We took home a tree that had clearly been discarded by another family. We did not wait in the 50 person line to have the end sawn off and the branches gently bagged. We just bought it and threw it on top of the Not-so-mini-van

We now have a tree WITH LIGHTS in our house.

I put on the birds of peace, pairs of them with ribbon tied between their beaks.

I wish hope and mostly peace on this world... and more locally I wish for hope and peace in my family.

01 December, 2007

I had an experience today which made me realize (again!) how much I love my husband... the one who does dishes only when asked, doesn't ever wake up when a baby cries, and needs to be reminded to get a haircut...that husband.

I love him because he knows, that even though his first instinct is to mind his own business and stay out of other families' messes, he knows the right thing to do and always, always steps up to the plate to lend a hand to someone in trouble. He puts flares down. He paints before the landlord comes. He moves your stuff, or someone else's at the last minute. He waits until you are safely inside with the door locked. And he shows up with the flares, the paint, the truck or a flashlight.

I love him because, even when it seems like he has no idea what really matters to me, he does. He knows what is important to me and my heart and without complaint or hesitation, jumps in, or out, whichever is necessary.

and i love him because my only real complaints about him are really, for the most part, the most superficial of things.